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Mast cell leukaemia
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3.30pm 14th October webinar - Immunisations and living with the challenges of a compromised immune system with CLL
Leukaemia Care have organised this webinar to follow on from yesterday's webinar for people affected by a diagnosis of CLL . It will be held at
3.30PM GMT 14th October
You can register in advance here: https://us02web.zoom.us/webinar/register/WN_0_8lKqLPQVGf4JYvwt2aRw The webinar is to aid with
Leukaemia Care have organised this webinar to follow on from yesterday's webinar for people affected by a diagnosis of CLL . It will be held at
3.30PM GMT 14th October
You can register in advance here: https://us02web.zoom.us/webinar/register/WN_0_8lKqLPQVGf4JYvwt2aRw The webinar is to aid with
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Join us tomorrow for webinar - COVID-19 and leukaemia; what more do we know?
Join us
tomorrow Tuesday 28th September at 4.30pm
for a discussion and update from clinical experts and trials data looking at strategies for the immune compromised.. You can register here: https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w This Leukaemia Care webinar will explore
Join us
tomorrow Tuesday 28th September at 4.30pm
for a discussion and update from clinical experts and trials data looking at strategies for the immune compromised.. You can register here: https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w This Leukaemia Care webinar will explore
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Pruritus and peginterferon
Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.
Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.
caroline_284
in
MPN Voice
3 years ago
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My HCT was low for me..help.
I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normally don't get a CBC for 2-3 months after a PB to allow my HCT to get above 42 which is when I get a PB. By on 9-22 I was at the doctor so I got a CBC. It was about 40 days after my phlebotomy. My hemo just emailed that he
I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normally don't get a CBC for 2-3 months after a PB to allow my HCT to get above 42 which is when I get a PB. By on 9-22 I was at the doctor so I got a CBC. It was about 40 days after my phlebotomy. My hemo just emailed that he
Elizka
in
MPN Voice
3 years ago
NHS app health record says my GCA is minor!
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this: 29 October 2021 Giant cell arteritis without polymyalgia rheumatica Significance: Minor Status: Active I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after
Broseley
in
PMRGCAuk
3 years ago
Sodabread
Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc
Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc
Sodabread
in
MPN Voice
3 years ago
An unusual, potent antibody to SARS-CoV-2 variants is isolated from a recovered patient
Given time, ongoing mutation of the SARS-COV2 virus is likely to produce a super-lineage, at least as transmissible as the Delta variant and more resistant to current vaccines and monoclonal antibodies aimed at different targets in the receptor binding domain of the spike protein. A variety of candidate
Given time, ongoing mutation of the SARS-COV2 virus is likely to produce a super-lineage, at least as transmissible as the Delta variant and more resistant to current vaccines and monoclonal antibodies aimed at different targets in the receptor binding domain of the spike protein. A variety of candidate
bennevisplace
in
CLL Support
3 years ago
Pfizer Pill
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
I received this news via the New York Times which, if true, will be helpful as we learn to live with this wretched disease. A Covid pill developed by Pfizer cuts the risk of hospitalisation or death in vulnerable adults by 89 per cent, according to a clinical trial carried out by the US company. Incidentally
Thelmarina
in
PMRGCAuk
3 years ago
I’m new here…
My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.
My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.
GrannyMyers
in
CLL Support
3 years ago
Et with calr gene
I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this Thanks Marie
I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this Thanks Marie
iffs
in
MPN Voice
3 years ago
Long Term INF Results
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
EPguy
in
MPN Voice
3 years ago
Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason.
Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions! https://cllsociety.org/2021/09
Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions! https://cllsociety.org/2021/09
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
CLL Society Webinar The Right Tests at the Right Time for CLL. Tests to guide treatment in all phases of CLL have never been better!
Coming this Friday October 15th: The Right Tests at the Right Time! Testing to guide treatment in all phases of CLL has never been better! Hear the stunning first-hand accounts of CLL patients Tammi Garrett and David Klausmeyer, whose treatment regimens were radically changed by critical testing, echoing
Coming this Friday October 15th: The Right Tests at the Right Time! Testing to guide treatment in all phases of CLL has never been better! Hear the stunning first-hand accounts of CLL patients Tammi Garrett and David Klausmeyer, whose treatment regimens were radically changed by critical testing, echoing
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
No more mutation test?
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Anonymous022719-
in
MPN Voice
3 years ago
Extremely worried about the value of IL-6 and IL-8 explored, what should I do?
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
merlisa
in
MPN Voice
3 years ago
Richter transformation of CLL: a British Society for Haematology Good Practice Paper
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
Jm954
Administrator
in
CLL Support
3 years ago
Leukaemia Care webinar - COVID-19 and leukaemia; what more do we know?
Please join us on
Tuesday 28th September at 4.30pm
to discuss where we are today and updates from clinical experts and trials data looking at immunisation strategies for the immune compromised..
You can register here:
:https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w
Please join us on
Tuesday 28th September at 4.30pm
to discuss where we are today and updates from clinical experts and trials data looking at immunisation strategies for the immune compromised..
You can register here:
:https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Webinar tomorrow - Leukaemia Care & ACAS – I have leukaemia: what are my rights at work?
Join us at 3:30pm tomorrow the 15th of September via Zoom or Facebook
We've teamed up with the Advisory, Conciliation and Arbitration Service (ACAS) https://www.acas.org.uk/disability-at-work this is a timely webinar that you may find of help to gain understanding and access to appropriate information
Join us at 3:30pm tomorrow the 15th of September via Zoom or Facebook
We've teamed up with the Advisory, Conciliation and Arbitration Service (ACAS) https://www.acas.org.uk/disability-at-work this is a timely webinar that you may find of help to gain understanding and access to appropriate information
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Lymph node biopsy results
Hello everyone, just a quick update- my husband finally went for results of lymph node biopsy and thank goodness no mutations. We’re now trying to decide whether to have ibrutinab or ventoclax treatment. Best wishes to everyone Lesley 😊
Hello everyone, just a quick update- my husband finally went for results of lymph node biopsy and thank goodness no mutations. We’re now trying to decide whether to have ibrutinab or ventoclax treatment. Best wishes to everyone Lesley 😊
Lesley3
in
CLL Support
3 years ago
LLS Ciitizen: Emerging Research on COVID-19 and Blood Cancer on Thursday, September 30 at 1:00PM ET. UPDATE Research Now webinar,
Thank you for joining the LLS National Patient Registry and playing such an important role in our efforts to support blood cancer patients during the pandemic. Information continues to change rapidly, and vaccine effectiveness for blood cancer patients remains an urgent issue. That is why LLS is
Thank you for joining the LLS National Patient Registry and playing such an important role in our efforts to support blood cancer patients during the pandemic. Information continues to change rapidly, and vaccine effectiveness for blood cancer patients remains an urgent issue. That is why LLS is
lankisterguy
Volunteer
in
CLL Support
3 years ago
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